Feeling Alone with ME/CFS & Fibromyalgia

I have said over and over again that I am extremely fortunate to have such a wonderful, caring husband who is very supportive of me and what I have to go through daily with all of my illnesses and health problems. I realize that he signed up for a lifetime of my illnesses running our lives much of the time and how hard all of this has to be for him.

Even with all of the support, I still feel so alone most of the time. There isn’t one person in my family and social circle who understands what it is like to feel like crap all of the time or that understands what it is like to have to plan my days around naps and making sure I get enough rest. I don’t blame anyone for not totally understanding because how can they? It’s impossible for someone to get it totally when they haven’t walked a mile in my shoes.

I feel as though I never fit in anywhere, that I’m a social outcast, and that I my illnesses and how they make me feel sends the wrong message to others. There have been several instances where, due to a ME/CFS flare and Fibromyalgia flare, I have been socially unable to deal with groups of people, the noise of small children, etc. without having to leave the room or I will have to go to bed. I know for a fact that this has left people feeling as though they are not welcome in my home or that I am snubbing people, but that is not the case. Even when I try to explain how I feel, it is impossible for others to get it.

Here lately my health has really taken a turn for the worse and I believe a lot of it is due to all of the pain in my leg. The fatigue I have been experiencing is different than the fatigue I usually suffer from with CFS. I find that I am sleeping, or trying to sleep, every chance I get. Even though I know I can’t help what my body is doing, I feel bad for my son. He doesn’t have much of a mom and it has to be hard on him also.

Hopefully living with a chronically ill parent will teach him compassionf or others when he grows up. I don’t want him missing out on anything now. Life is too short to miss out on all of the great experiences and it seems as though I’m missing out on everything lately.

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I can so relate to your post. I have chronic Migraine and CFS, IBS as well as some other undiagnosed GI problem which is really bothering me right now. Today I went out for a walk in the park with my husband and the dog, as it was a warm spring like day. We went less than half our usual route and I had to sit and rest three times in the half hour or so we were out. Neighbors & friends went walking past and I’m sure it looked strange that I was walking like someone twice my age.

By the way, thanks so much for the link in your Migraine resource section. I have been meaning to come spend some time on your site for a while, as I have a lot more to learn about CFS & fibromyalgia.

Don’t worry to much about your son, I don’t know his age, but my kids 18 and 14 seem to have adjusted just fine to having had a chronically ill Mom for the past 8+ years.

Reading you letter reflects my life so much. I have a fantastic husband who understands and helps alot and two children 12 and 15. I have had M.E. for 7 years now and I find that i still haven’t got used to the terrible ups and downs of this cruel illness.
I feel so lonely all the time even when in company. I too have nobody who understands the pain the guilt and not being able to live your life. I find myself being jealous of people with a constant illness.
I only have one friend now that stays in touch with me and very rarley get out of the house in the week. I have a large family but I live away from all of them, and they don’t understand as they only see me when I am having a good patch. I find I am just existing and not living at all. Weekends are never planned as I can’t be sure I could do anything.
I know that I am lucky compared to some M.E. sufferers as I do have good days and good hours (very few and far between) but I can’t get over the lonelyness involved. People/friends/family don’t understand if you have to change plans at the last minute or if you are not sure if you can go to the family party. It makes you feel like you are putting people out and hurting their feelings if you keep letting them down, so I find that I have cut myself off from most people. It is very hard for other people as you say to understand and I am not sure I would, being an outsider but it does hurt alot that people don’t even try. Because I no longer work I have been called a lady who lunches by my sister in law! Even though I have tried explaining the illness she thinks that I am really lucky to not have to go out to work and that it is a luxury!! I don’t tell most people as I find they treat you differently.
As for my children I have also tried over the years for them not to miss out on anything because of me. But they do understand and are extremely helpful but don’t worry, they are still normal and have their tantrums and teenage outbursts. If anything we are closer as I spend more time with them than before when I was working full time. I do still feel very guilty that they have to deal with this illness too, but they are stronger for it and realise to make the most of things!